Wednesday, June 29, 2011

Sweat is pouring down your forehead; your eyes are blurry from a headache. You turn to the side and vomit on the ground.A friend grabs you by the shoulder and says “You’re sick; you must have the flu or something. You better lie down while I call a doctor.”You respond, “What are you talking about, I’m not sick.” Is it possible to not know when you are ill? In fact it is and it is estimated that about half the people with schizophrenia have no idea that they have a serious disease.This phenomenon is a symptom called anosognosia that is at the bottom of treatment resistance with many mentally ill patients.This is completely different from the psychological process of denial, where a person is aware of the problem, but denies its importance or impact and won’t deal with it.Denial is common with substance abuse while anosognosia is often found in certain types of brain injuries and mental illness.

Those of us who provide treatment to people with mental illness know what a difficulty anosognosia can be. We imagine that somehow logic or facts will be our ally in explaining to an intelligent person the cause of their discomfort and the symptoms related to it. Not only are logic and facts useless, they can often become an issue that will divide a treatment professional from their patient.

The Story

Ray was a good guy. Born and raised in Ithaca, both of his parents worked at Cornell. The onset of his schizophrenia was during his second year of college and by the time he was thirty, he’d been hospitalized a dozen times.He had many of the positive symptoms, like hearing voices and having delusions, and had few of the negative symptoms that can isolate an individual.He was a public presence, a tall red head dressed with vest and scarf and always carrying an arm full of books.He would haunt the coffee shops and public spaces at the colleges during the day and nurse a beer at one of the local taverns in the evening.When given a chance he would strike up a conversation with someone sitting nearby. He’d try to break the ice with facts, “Did you know that you can sail from Ithaca to anywhere in the world?Cayuga lake links up with both the Hudson River and the Saint Lawrence through the Erie Canal.” This type of fact might lead to a discussion about boats, sailing, canals, rivers or travel, all of which Ray could talk about.But often as not the topic would go to Ray’s true interest, languages.

Ray claimed to speak at least seven languages and have working knowledge of several more.Beyond English his claims went unchallenged by anyone who spoke them.All of them happened to be ancient languages and no one else spoke them, except Ray and the native speakers whose voices he heard daily.They spoke in Carthigenian, Phonecian, Indochinese and at least four others which may or may not have existed.Ray was fortunate in that the voices he heard were different in tone from many of the voices other people with psychosis suffer. Many people who hear voices note that they are nasty and disparaging.For the most part, Ray’s voices were pleasant and instructional.

Ray had been a patient at the clinic for many years and would go through periods of cooperating or not cooperating with treatment. After a hospitalization he would take medication for a while and then stop. Soon problems would arise.Even with medication Ray had few skills of daily living, disorganization being prominent if he was treated or not.He had problems paying his bills, cleaning his house and maintaining personal hygiene.At the time this incident took place, he had been assigned a caseworker I’ll call Betty, whose job it was to ensure that his daily living needs were met.She was new to the job, but not new to helping, having worked in youth programs and foster care.She was a college graduate who’d had little exposure to mental illness and was very earnest in her role as helper.I was her colleague, not her supervisor and would try to give her some hints about the best ways to approach some problems.One big issue was smoking.Ray rolled his own, always having a pouch of Drum tobacco and papers. A problem with this was the ash constantly falling and the burn marks on the rug and the bedding and Ray’s clothing. It was rare that I saw him without a smoke in his hand and all of the other residents of his rooming house shared his habit. Betty was concerned about fire and tried a hundred different ways to make Ray’s smoking safe.Unsafe smoking was part of the job, but no Doctor would admit a mental patient for unsafe smoking.

Betty came to me one day and told me that she’d been to Ray’s house and he’d been in his kitchen standing at the stove with a frying pan on high. In the pan were leaves and twigs and berries from the yard.They were burning.Betty asked him to stop and he did.When she asked what he was doing he responded, “I practice a form of animism that demands plant sacrifice.A number of prophets have requested that I do this.” Dumbfounded, she made him promise to stop and he did.When I saw him downtown later that day he was agitated. I asked him what was going on, he told me that there were many demands on him and he was always being told by someone to do something.

I asked Betty to meet me at Ray’s the next day after finding out he‘d most probably stopped taking his medication.Due to another crisis, I arrived late and found Betty standing over Ray who was sitting on his bed.“Don’t you understand that those voices you hear, those things you are told to do aren’t real! Those are symptoms of your illness. When you hear those voices you need to ignore them, just pretend they’re not there.The pills will make them go away. All these ideas you have aren’t real. It’s all part of the illness. Promise me you’ll take the pills.”Ray knew how to be a good patient and nodded until she stopped.I walked through the house and on an enclosed back porch found burn marks and charring in several locations where there’d been fires on the wooden porch floor.I asked Ray to come out.“Is this part of your sacrifice? It looks like you’ve done it a couple of times.”He admitted it was him, “I have to do it, there can’t be redemption without sacrifice. “He said. I responded by telling him I understood, but that starting fires on the floor of a wood frame house put everyone at risk. “You’ve been really upset for a while now. How about I arrange for you to go to the hospital for a short stay and you can relax and let other people worry for a change?”

Ray was relieved as Betty and I drove him to the hospital. On our return she asked me about her conversation with Ray. “Can’t we make him understand that the voices are symptoms?”I replied, “The voices he hears are real voices, not like the internal voice all of us have. He hears them just like you are hearing my voice. The voices take on power, like in his case helping him to create his identity.”Noting her Irish surname I asked her if she was raised Catholic. When she responded yes, I said “Suppose you heard the voices of Jesus and Mary and you were convinced that you had a special relationship with them and they spoke to you all the time. Would you do what they say?” “Of course”, she said, “But it’s not the same.”I responded with a favorite quote from Isaac Bashevis Singer.“Religion is faith, not reason.”What I understood was that because of his voices, Ray’s beliefs are stronger than ours.

In over twenty years of providing mental health crisis services in Tompkins County, New York, I signed hundreds of orders for people to be taken into custody and brought to the hospital against their will. The order I signed is referred to in NY as a 9:45 order. It was not for hospitalization, but for custody and transport to the emergency room for evaluation. It is a huge responsibility to have the power to take people's rights away, even for a brief time. I was always very thoughtful and intentional when I was called upon to sign an order. Individuals had to meet the letter of the law, to truly be "...likely to cause harm or come to harm.." and the danger be" imminent". I always wanted to be in a position to be able to defend my actions in court, if need be.

Stories

All stories on this blog are edited to ensure confidentiality or are part of the public record in police reports and are my recollections. My hope is that they will have us think about the policy. The following incident took place in 1991.

The Story

The first time I got a call about Dan was from the president of a Cornell fraternity that had rented him a room for the summer. Dan had paid for the entire summer and according to the caller was "acting weird". He'd been making strange grunting noises in his room that were loud enough to bother others on the hall. Someone had knocked on his door to see if he was OK and Dan had not opened the door, but yelled through it that he was alright and he'd try to be quiet. When it continued, another person banged on the door and told him to cut it out. Dan responded by coming into the hall in his underwear and screaming, " The torture has got to stop, I had nothing to do with it and all of you are going to have to learn that lesson." The young man who had banged on the door was so shocked by Dan's reaction that he quietly returned to his room and wrote down what he'd said. The grunting continued as did some yelling and banging around. Most of the fraternity brothers left for the summer and the few renters moved away from the hallway where Dan resided. When they encountered him in the shared spaces, he'd avoid eye contact or scowl. "He's not normal and he's scaring everyone," the caller said and informed me he was leaving town the next day so "no one is in charge."

My policy was to respond to every call. I arranged to meet the fraternity president at the house and to see Dan. The building was a rambling mansion with huge common spaces with beautiful woodwork and fireplaces on the first floor and about twenty rooms divided into two wings on the second floor. I knocked on Dan's door softly and stepped back. I heard movement behind the door. I knocked a little louder and called his name. "What! What do you want?" came from behind the door. "I need to talk to you, could you please open the door." I heard more movement, things being moved away from the door. It opened 5 inches and I saw a white man about thirty with bushy hair and beard. "My name is Terry, I need to talk to you." He obviously knew that he'd been causing problems and having someone else visit was not unexpected. "Folks here are worried about you and they asked me to come see you." "Where are you from?" he asked. "I do outreach for the county," I responded. "Do I have to talk to you?" he asked. I suggested that it would be better if he did talk to me. I wanted to let him know that if things didn't change he might be evicted. He was as cooperative as anyone would be in that situation. In fact, he even came out in the hall to talk, a thin man just under six feet dressed in dirty jeans and tee shirt, he smelled unwashed and his room gave out an unpleasant odor. When I at last gave him my business card, explaining my outreach was for the Department of Mental Health, he became angry again. "You people made my life miserable in Binghamton and now you're doing it again." I explained that in fact I was trying to help by being his advocate with the fraternity." If there are any more problems, let me know." I left him knowing I'd see him again.

The next week I got a call from a police officer from college town. He'd worked 3-11 and the previous night had responded to a dispute at a fraternity. A housemate had thrown away things that Dan had stored in the refrigerator and Dan had come to his room screaming at him and acting in a threatening manner. The housemate was scared and called the police. By the time they arrived, Dan had calmed and returned to his room. He'd given the cops my card when they arrived and said I was helping him. Scott, the police officer, told me the place smelled really bad, but since things were calm he'd not insisted on entering the room, but felt obligated to return. When we arrived at the house, we were met by two other renters who were scared and angry. "You have to do something." they said. Not a week went by during my whole professional career that I did not hear that phrase. When we got to the room and I knocked, identifying myself, Dan opened the door. When he saw Scott, he asked, "What's he doing here. I didn't do anything." I responded that we were following up to make sure there were not further incidents. "We need to come in your room," Scott said. "I don't want you to," Dan responded. Scott said that the smell was so bad that there may be health or safety violations and if need be he'd get the building department and seek the landlords permission to enter. Dan reluctantly let us enter. I noted that his jeans were inches bigger than his thin waist and he'd tied a rope around them as a belt. The smell was staggering. Jars filled with a yellow liquid lined the shelves. Filled plastic ziplock bags were piled on the desk. The bed and floor were filled with dirty clothing and books. "What's in there?" Scott asked, pointing to the jars, us both knowing the answer. After further examination I asked Dan to join us downstairs to talk. When he hesitated, I assured him we were just going to talk, nothing else.

"Why?" I asked, referring to the jars of urine and bags of feces in his room. He explained that he had certain knowledge that he had aquired as a graduate student at Princeton that made him a national security risk. "Some people know what I know and they don't want me to know it. Several times they have tried to brainwash me using basic techniques that were easy to spot. Now they seem to be poisoning me. I've been testing what I eliminate to find out how they are doing it." Scott stood up asking if I needed him any more. "You've got to clean that up and not have fights with the housemates!" Dan agreed and continued to tell me his reasons for his actions. Given his belief system, delusions that are symptoms of schizophrenia, everything he did made perfect sense. I told him I'd be back in two days to make sure things were cleaned up.

Back at my office I consulted with collegues including our staff psychiatrist. Not much we can do, was what we all decided. Two days later I returned and Dan reluctantly let me in his room. The smell remained, but the jars and bags were gone. Dan had on a pair of scrubs he said he got from the Psychiatric unit in Binghamton Hospital. They didn't show how thin he'd become, but I could see it in his face and hands. "Are you eating? Do you need some food or help shopping?" He shook his head and spread his arms indicating the missing objects. "Satisfied?" I wasn't, but I then left at his request.

The next week I got a call from the fraternity president. "All the other renters want him gone. We'll give him all his money back, even the deposit. There were jars of piss and bags of shit in the basement. The whole place stinks. You have to do something." I drove to the house and when I got there, no one else was around. I went to Dan's room and knocked on his door and called his name. There was no answer. Testing the door to see if it was unlocked, I slowly entered, "Dan, it's me Terry, can we talk?" I saw the piles of clothes on the floor and bed and wondered what to do. I got my notepad from my jacket to leave a note and noticed movement from the bed. One of the pile of clothes was Dan. He was lying on his side, legs pulled up, his head bowed toward his chest. His arms were crossed, his hands curled on themselves. Dried spittle was on his mouth, his eyes closed. Only the scrubs kept him appearing as a man not an infant. Initially, I couldn't detect breathing. I touched his shoulder and he moved. I gathered him in my arms and took him down to my county car, placing him in the back seat. I knew I should have found a phone and called an ambulance, but it seemed to me that moments counted. I parked in front of the Emergency Room door and entered with Dan in my arms. The nurses and doctors knew me very well and directed me to a room. They'd never seen me in tears before and were taken aback by my behavior. When I got a call from the head nurse a few hours later, she'd said, "He only weighed sixty four pounds, when they get to that stage, they rarely survive."

Tuesday, June 14, 2011

It is time to retire “danger to self or others” as the criteria for hospitalization for those with serious mental illness and replace it with a more humane “need for treatment” approach.Danger to self or others has been a failure on all levels. Deinstitutionalization and non-hospitalization have left hundreds of thousands of the serious mentally ill on the streets or in jail.“Danger to self or others” has caused death and injury to thousands of the mentally ill and their families and friends, and police officers who attempt to take them into custody.Police have become the primary providers of mental health services in the United States, threading an incomprehensible system with few guidelines for “danger to self or others”. If they don’t take someone into custody something bad may happen, if they do, they may be tied up for an entire shift at the emergency room only to find that the hospital has discharged the person in less than 24 hours.

If an 85 year old man with the brain disease of Alzheimer’s is found in his pajamas walking down the street in a snowstorm, no one protests when he is taken for care. When a 25 year old man with the brain disease of schizophrenia is sleeping in a doorway during the same snowstorm, unless he is in imminent danger, he has the right to be left alone.The curse of Freudian psychology, where we are somehow responsible for the disease that has altered our brain continues to drive policy for millions of seriously ill Americans.Because of their illness they won’t seek help and because of our outdated view of mental illness we won’t mandate treatment.

The rights of those with serious mental illness need to be preserved: Life, Liberty and the Pursuit of Happiness or the right to have a horrible, untreated illness that often results in poverty, incarceration and early death.

About Me

I am an MSW Social Worker teaching counseling courses at Ithaca College. I worked in public mental health with the seriously mentally ill for over 23 years. During that time I ran a county outpatient clinic that served individuals with chronic mental illness. I also supervised and provided crisis services. I am an FBI trained hostage negotiator who co-founded and ran a regional hostage negotiation team with local law enforcement agencies. During nine years as a negotiator I participated in nearly sixty events. I have been trained in threat assessment by Gavin DeBecker,and in Critical Incident Stress Management by Jeff Mitchel. I also consulted with Crisis Management International and after September 11, 2001,I provided treatment to hundreds of survivors of the World Trade Center attack. My work developing police/mental health partnerships was the subject of a front page article in the New York Times and a segment on Sixty Minutes ll with Dan Rather (photo of Lt. Beau Saul, Dan Rather and Terry Garahan). I am in the process of publishing a novel, "When Truth Lies, a Journey with Schizophrenia." Due out this fall. I am a proud member of NAMI.